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I have Crohn's Disease and am having hard time dealing with it.?

I was diagnosed with Crohn's Disease about 12 months and am having my first flare up since diagnosis. I've seen a gastro and have had a CT scan recently. I'm taking Salazopyrin, prednisilone, somac, flagyl, ibuprofen and paracetamol (Dr advised). Thing is I'm just sick and tired of being constantly sick and tired, not to mention the odd pain and horrible taste in my mouth (due to meds I think). I have great support from my wife and friends but I'd just like someone to talk to who has been there done that. It is seriously getting me down, and being prone to depression in the first place is making things worse. I suppose I'm just asking for some help or advice in dealing with this flare up and the side effects of the meds.

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  • 1 decade ago
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    It's actually pretty common for those of us with a chronic disease - like Crohn's - to be depressed. You might check on how much ibuprofen your doctor thinks you should take. Mine took me totally off NSAIDs. Prednisone is really hard, too.

    My regimen has included Asacol, Colazal, Prednisone, Bentyl (reduces the spasms) and several others over the years. I was originally diagnosed with Ulcerative Colitis in the 80s, and it's only recently a colonoscopy showed it was really Crohn's. Luckily the treatments are very similar.

    Recently I switched to Remicade. It helps not only the Crohn's but also my arthritis. It's not a silver bullet, though. I've had some reactions to it and may not be able to stay on it. Plus it's very expensive. My treatments cost $300 each - after insurance pays. There are some new mesalamine treatments (one is taken just once a day), and they are doing a lot of research. If you continue to have significant flares, you might be able to get into a research study.

    For now, you might ask your doctor if you should be taking Iron. I can't take the over-the-counter stuff, but a prescription version, Repliva, helps without a lot of side effects.

    Also, see about checking out a support group. You can find one through the Crohn's & Colitis Foundation (www.ccfa.org) or your hospital or doctor. Just having someone to talk to who's been there helps sometimes. You know they understand and they don't feel that you're faking or overreacting or just going for sympathy.

    Tell your doctor about the side effects of the meds. Maybe he can switch you to something that you react less to. The big thing to remember is (pun intended) This too shall pass.

    Try to keep a sense of humor about things and just do what you need to do to get through this flare. If you had a 12 or 11 month remission, you will probably continue a similar pattern. When you feel a flare coming on, try to get on your meds early and get a jump on things. Also, learn what you can eat during a flare and what aggravates it. Everyone is different and can eat different things.

    If you need someone to correspond with, feel free to send me a note. I've been doing this for 20-something years, and maybe I can help. You can send a note to my burnlapp@yahoo.com address. I don't check it every day, but I try to get on at least once a week.

    Again, tell your doctor what's going on, including your reaction to the meds. He will work with you to find what works best.

    Good luck

    Source(s): www.ccfa.org
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